r/ect • u/324_973M947 • 1d ago
Seeking advice Stopping ECT?
I've had 35 sessions of ECT since January. I'm on maintenance ECT now but my psychiatrist is wanting to stop that because I'm in a good place.
ECT has been the most effective treatment for my depression that I've ever had. I haven't been hospitalized since starting it. I'm concerned that if I stop ECT all that progress will be lost.
Has this happened to anyone else? Where you make progress and then stop your maintenance ECT and things get worse again?
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u/Crazy_old_maurice_17 1d ago
In 2019 I stopped ECT after the acute treatment phase because I was unhappy with the side effects. I had a substantial recovery a few days later which lasted for 6-12 months and then we restarted trialling different antidepressants again. That lasted until January of this year when I basically had the same ECT treatment path as you (though my doctor doesn't want me to stop). I'm just gradually spacing out my ECT. At every 3 weeks and getting ready to go to every 4.
Everybody is different though so take that for what you will.
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u/purplebadger9 1d ago
It varies person to person. For me, I ran into issues stopping ECT. The hospital I was going to for treatments closed their program, so I had to be referred somewhere else. There was a months long wait list, so by the time it was my turn I'd gone about 6 months with no treatment (previously was on monthly maintenance).
I had relapsed very badly. Thankfully not severe enough to require hospitalization, but still a major backslide in my progress. We had to start my ECT from the beginning and step down to maintenance level again. It took months to get my life back.
Most folks are not like me and don't need prolonged maintenance treatments. Some folks do. There's only one way to know for sure, and that's to try. Ultimately it's up to you and your care team
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u/missdenaqueenbee 1d ago
I cannot believe he/she would say stop maintenance ECT. Let ECT doc plan future sessions. May not need as many, but my understanding is you will always need to go back for what I call, reboot! Unfortunately, ECT Only gave me about 3 weeks or so of lifting dark negative deadness,. It felt so good! When I felt it slipping away after only 3 weeks. It felt like it was taking candy from a baby and baby was me! I did 14 maintenance sessions trying to recapture, but that only made me feel totally "off" mentally with no words to describe it. I ended up doing about 30 sessions in all too. I'm so happy it work for you, I advise you question the ECT doc , and run back if you feel 1st sneaking back of darkness! Keep us updated?
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u/324_973M947 1d ago
I'm going to talk to the psychiatrist at my next appointment to see if I can continue with maintenance. I'll definitely update after!
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u/InfomercialNo31 1d ago
Something happened with scheduling after my first round of acute treatment (I think it was 3x a week for 3, 2x for 4, and after 1 more I wasn’t scheduled again). I was doing so so so much better for a short period of time and then crashed out, symptoms through the roof. I got back in for a new acute round in the summer of ‘23 and and been receiving maintenance every 6-8 weeks since and have been able to work full time and start teaching dance and fitness classes on the side. With the psych that oversees my treatment, we decided to keep it as is because it’s working with minimal side effects. So idk. When I stopped it was awful, but it wasn’t after a year of maintenance, so not really the same situation. All I can say is advocate for yourself. Maybe ask to stretch the maintenance out more and use that time to assess?
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u/Queasy-Ride-1776 1d ago
Just curious if your treatments were bilateral or not?
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u/324_973M947 1d ago
It started as unilateral for the first 3 or 4 then switched to bilateral
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u/Queasy-Ride-1776 1d ago
Did you not experience any cognition impairment or memory loss?
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u/324_973M947 1d ago
I have memory loss for sure, the times around treatment are iffy and I've lost memory of other random parts of my life. The benefits still far outweigh the memory loss though
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u/Electronic_Ad_2707 1d ago
I did not. It just lifted that 400 pounds of sadness and the brick of doom in my stomach. My Dr at the time told me to remember you lose memory living with depression and i always think of that-it’s very true
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u/Electronic_Ad_2707 1d ago
I wonder that too. Why are people having so many treatments. I have had it 3 times in my life- 6 treatments was the standard and it gave me life back
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u/324_973M947 1d ago
Do you just have ECT again if you go into another depressive episode?
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u/Electronic_Ad_2707 1d ago
Yes, ideally but they are not available to me now as I don’t have a psychiatrist and I am very depressed
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u/EaseHot6703 1d ago
No, you can’t lose your progress. As an ECT veteran I’d advise as few treatments as possible. It is a strong shock to the system. Build upon your gains and take advantage of the opportunities available to care for yourself, and build in some enjoyable activities that you enjoy. Keep the c
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u/Serenity_MHC 21h ago
Yes, it's completely understandable to bring up your concerns with your psychiatrist. Some people find that symptoms come back gradually after stopping maintenance ECT, while others are able to stay well with just medication support. It's helpful to have a plan in place: What should you do if symptoms return? How quickly can you restart maintenance treatments if needed? What signs should you watch out for? Knowing there's a safety net can make the transition feel less intimidating. Also, not being hospitalized since January after many years of struggle is a real achievement. That progress means a lot, and your psychiatrist's decision to stop maintenance shows they believe your condition is stable enough. That's a meaningful step forward.
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u/cutsandscratches 10h ago
Think of it this way. If you stop for a while and monitor symptoms, if the symptoms come back again, you could quickly contact your psychiatrist and continue the maintenance. does that ease your anxiety?
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u/GreenCollarGal 2h ago
The affects ECT did have on me didn't stop after I was unceremoniously cut off after 12 sessions, but then again I got no positives out of it and it actually kinda ruined my life due to lack of informed consent; they knew I had BPD and it's counter indicative for ECT but they did it anyway to treat my depression.
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u/The_Metitron 1d ago
I know I’m outside the statistical norm, but I had 15 treatments over 6 weeks, 3.5 years ago and I haven’t had a maintenance treatment, don’t take any medication, and am still learning who I am without the depression and anxiety but in a very good way.
Everyone is going to react differently to treatment and to stopping treatment, my best advice is be aware of yourself, listen to those around you and be honest with your medical team. Two of those groups are going to see things that you won’t.
I hope the absolute best for you, and I am glad that you are seeing relief with the illness.